Sunday, January 28, 2007

We increased Eden's private PT (paid for through our medical insurance) to twice a week at the beginning of the year. Holland gets private PT once a week, and they both see the therapist from the school district once a week. That's five hours of PT a week between the two of them. Eden also has hearing impaired services (teacher consultant and speech and language pathologist) for an hour a week, so we have about 6 hours of therapy at home every week. That's a lot of work for a 2-year-old!

Eden has always been such a good worker. She never complained during therapy, and has always tried everything we have asked her to do. I guess those days are over. The older she gets, the more stubborn she is becoming! I guess it's a good thing, because she is just letting us all know what a "normal" little 2-year-old she is. She only wants to do what SHE wants to do. She yells and screeches, throws herself down, turns into a total limp noodle, or a stiff board, any time we try to get her to do something she doesn't want to do. It's getting harder and harder to get her to work at all.

At first, Eden's fits were so upsetting to me. I had a hard time not crying through therapy myself. The more it goes on, the more I am noticing that she is just being a total punk! I swear, she looks at me to help her, save her, but I can see the smile hidden beneath the snarl that we have become so familiar with. It's a half smile, barely noticeable beneath all the yelling and hitting and pushing us away. She is totally testing us. She will yell and yell and complain and complain, then turn into her beautiful angelic self as soon as you find an activity that she WANTS to do.

The problem has been compounded by the pony walker. We LOVE the pony walker, and Eden is zooming around the house now. She gets better and faster in it every day. Except now, that's all she wants to do. She wants to be upright, and she wants to be mobile. She does not want to do any of her floor work. She doesn't want to sit, and she certainly doesn't want to practice her military crawl. She doesn't even want to climb!

At the same time, she is getting better and stronger at these things. When we are not paying attention to her, I see her pulling herself along on the floor with her head up nice and tall. If I make a move over to help her or to encourage more, she starts yelling and (fake) crying at me. Argh. It can be really frustrating!!!

I've been repeatedly reassured by her PT that this is completely normal for her age. It happens to the best of them between the ages of 2 and 3 1/2. Pam says it will get better again in a year. A YEAR!

SO, like I've always said...Eden is very smart, very determined. She is strong-willed, and persistent. Her attention span and focus for a task is amazing.

OR, you can look at it this way...Eden is very STUBBORN. She is hard-headed, obstinate, and inflexible.

Whichever way you look at it, she is adorable. I love her spunk, and her persistency in making her needs known. Those traits are going to take her far in life. If we can just make it to 3 1/2!!!

***Okay, before anybody freaks out...the scissors were NOT my idea! Markers, fingerpaint, playdoh, and tea parties with shot glasses? I'll take the blame for those. The scissors belong to one of Eden's PTs. Of course, Eden thought they were GREAT, and threw a huge fit when it was time to do something else!

Friday, January 26, 2007

When Holland and Eden were born I did a lot of research looking for other parents of micro preemies, and micro preemie stories. That was almost 2 1/2 years ago (oh my god I can't believe it). It was before the whole "blog" thing really took off, and I had never even HEARD of a blog. There was a lot of information about preemies out there, but not a lot of real life stories. I found a handful, but most of them were no longer being updated. The stories that we did find, especially the adorable and amazing Lucas and Austin, were very inspiring to us.

The biggest reason we started the blog was practicality. It was easier to keep our friends and family updated via the internet when we were spending every spare moment in the NICU. But I also thought it would be a nice way to meet other parents facing similar circumstances, as well as to offer hope, inspiration, and information to other parents out there wondering what they might expect as they began their journey.

I had no idea that "blogging" would have such a big impact on my life. I have met so many wonderful people that I now consider "friends" even though we only know one another in the cyber world. Halle Grace was one of our very first micropreemie friends after her mom found our blog and sent me an email. We had the chance to meet our micro preemie friend Kaitlyn in "real life" when we visited California last summer. I really can't imagine enduring this journey (the NICU stay, doctor appointments, feeding issues, delays, disabilities, and many many other issues we have faced) without the support of the other families we have met through our blog. In the midst of all the stress and fear and worry, it was at least helpful to feel a little less alone.

Since we began our journey, our list of micropreemie friends keeps growing and growing. As much as I want to, and would if I could, it has gotten hard for me to keep track of everyone! I don't want to leave anyone out.

So, I am creating this post as a blogroll of all of the micropreemie blogs out there, and am hoping it can serve as a directory for new parents looking for information and stories similar to their own. For this purpose, I will define "micropreemie" as any preemie weighing 2 pounds or less at birth, or preemies born before 26 weeks gestation.

If you have a blog about a micropreemie, please comment and tell us their name(s), your link, their birthday and gestational age, birth weight, length of NICU stay, significant NICU events, surgeries, and ongoing issues or complications if there are any.

And thank you to all of you who have supported my family and my girls over the years!!! I don't know how we would do it without you!

In the beginning our blog was all about having micro preemie twins, the many issues that we faced in the NICU and since, related to extreme prematurity. Over the past two and a half years it has evolved, and has become more and more about raising children with special needs.

I've gone from constant googling of "micro preemie stories" to looking for children with profound hearing loss, cochlear implants, cerebral palsy, and other moderate to severe disabilities. In looking for others with similar circumstances I found Fiona, who is close in age to my girls and has a cochlear implant. More recently I have found Jack and Moo, adorable little boys diagnosed with CP, who are a bit older than Eden and slightly further along on the CP journey than us. I have also found Dream Mom and Mete, who I have found to be wonderfully kind, supportive, and insightful in their blogging about life as the parent of a child with severe disabilities. I gain my inspiration to be the best mom I can be from these women, and from other parents who have paved the road before me.

I'd like to use this post as a resource for parents out there looking for information and support in raising a child with a disability. If you are a parent raising a special needs child, please comment. Tell me your story, including your child's name, age, and type of disability, so that parents looking can find others dealing with similar issues.

I am also interested in hearing from adults living with disabilities, particularly those with cochlear implants, CP, or who use a wheelchair to get around. I am sure your stories will provide hope and guidance for me, in my quest to be a strong advocate for my daughters, as well as for them in having role models to look up to as they strive to find their places in the world.

Friday, January 19, 2007

Thursday, January 11, 2007

This is one AMAZING little girl! We had such a good day of therapy. Today Eden got her pony walker. I have really been looking forward to it, ever since Pam, her PT, mentioned it to us before Christmas. Eden was showing lots of signs that she was ready to try it...bearing a tiny bit more weight on her legs more often, moving her legs like she is trying to walk when you help her, and saying the words "walk," "jump," and her most recent favorite "run." She's been really wanting to be upright, and to get around more, and has been crying and pitching a good 2-year-old fit when we put her down. So, I knew she was ready and I was really getting excited to try the walker.

I swear Eden knew what it was from the second she saw it. I said, "do you wanna walk?" and she got SO excited and started trying to get into it from my arms. Once in there, she grabbed the handles and started trying to walk right away. She did so good! She could move herself all the way across the room (about 10-12 feet) and probably could have gone further if we had more open space. She was SO happy.

She started playing a game with me, saying "bye, see ya" and I was supposed to go ahead of her so she couldn't see me. She would then walk until she could see me and would exclaim "HIIIEEE" with the hugest smile, then would immediately tell me "bye, see ya" again. She really thought she was BIG STUFF and would have done this for hours. She also liked turning the Christmas tree on and off, trying to buckle the belts in the high chairs, and opening and shutting the refridgerator door. We could tell that she was so proud and happy to be up and able to go where she wanted. It was a lot of fun and she didn't want to get out. In fact she cried and said "more... walk" repeatedly when we were done, even though we could tell she was getting tired. She was in there for like, 45 minutes, on her first time!

I know, both from our experiences so far, and from reading other blogs, that getting new equipment can sometimes be painful and emotional. Getting a new stander could mean that she will never stand on her own, getting a walker might mean she will never walk, and getting a power wheelchair might mean that she will never be able to get around on her own. I know these feelings, but today I am just happy for Eden because she is so happy and proud of herself.

On the other hand, I do feel some brief moments of sadness, just in knowing that she has been watching us, and Holland, for so long doing the things that she really wants to be doing herself. I hope this walker will help Eden do more of the things she wants to do independently. I will continue everyday in my pursuit of making her life as normal and happy and independent as I possibly can. Everyone knows she is doing her part!

Saturday, January 06, 2007

Friday, January 05, 2007

I am frequently reminded of how very lucky our family is to have our girls with us.

I feel such sadness and pain for other families when they aren't as lucky. I can only imagine what it must be like to go through losing a baby. It's hard to even think about how easily it could have turned out differently for us. As difficult as any day might be, I can't imagine going on without my girls.

Like I mentioned in the last post...we've already gotten our miracle. This family needs theirs. Please keep them in your hearts and thoughts.

Tuesday, January 02, 2007

I should title this post "Crappy 2007" because it has been...literally. Not that I think 2007 will be a bad year for us, to the contrary actually. It's just that both girls are sick with a tummy bug and have had diarrhea and vomiting for the past three or four days. It's hasn't been a horrible sickness. Not as bad as the one this time last year. Just a couple bouts of sickness a day. But it has cramped our style just a bit in really enjoying the first few days of the new year.

Holland and Eden spent the night at Nana and Papa's again on New Year's eve, and we had some friends over. We invited lots of people, but it ended up being just our nearest and dearest from good ole Wayne High and that was OK with me! I LOVE you girls (and guys:))

I personally had a super fabulous time. I can't speak for John who ended up sick and asleep by 10:30pm. Was it a touch of the tummy bug? Or just too much of the champagne punch? I guess we'll never know for sure;)

What I do know, is that 2006 wasn't nearly as bad as I thought it would be. It beat the hell out of 2004 and 2005.

It isn't that my gloomy predictions for 2006 didn't come true. They mostly did. It's just that what I thought might be the worst that could happen, turned out to not really be the worst.

Eden's CP is still fairly severe. On the surface it doesn't really seem that she has made much progress physically since this time last year, except that she has completely mastered rolling. She still can't sit up, still can't hold her head up for long periods of time, and has gained less than three pounds in a years time. But you know what? It's okay. She's bright, and she's sweet, and she is beautiful. She is spunky, with a lust for life, and the most incredible sense of determination and focus that I have ever seen. She's gonna be okay. You know what? She's gonna be MORE than okay even if she NEVER walks.

Obviously, I have days when I don't feel so optimistic. There are still days I could cry all day long. When things seem gloomy and hopeless and way too hard. But those days are getting fewer and further between. Dare I say that it is getting a little bit easier?

I guess I've come to a point of partial acceptance. Don't get me wrong, I still think it sucks. It sucks to see my daughter struggle to do simple things everyday. But you know what, I know that I'm not going to wake up one day and have two daughters with no disabilities. I'm no longer wishing on a star that Eden will start walking. I'm not praying for a miracle, because guess what? The miracle has already happened.

They are here. They are alive. They are happy. What more can we ask for really? It seems so selfish for me to ask for more when there are so many people out there who are suffering in so many ways that are just so much worse. We are the lucky ones. And I am thankful. 2007...here we come!

O, I believeFate smiled and destinyLaughed as she came to my cradleKnow this child will be ableLaughed as my body she liftedKnow this child will be giftedWith love, with patience and with faithShe'll make her way